Meeting:Thursday, Apr 11, 2024 -  7:00 - 8:30 p.m.

PRESENTER: Jill Cullen from the Guilderland YMCA

TOPIC: The importance of exerecise and information about the programs that the Capital  District YMCAs offer to people with movement disorders in particular. 

Did you know that you may be eligible for a free Silver Sneakers  membership to the Y? Check it out here.

WHERE:  Glen Eddy senior residence,

1 Glen Eddy Drive, Niskayuna NY 12309

Directions 

==========

Notes from our 4/11/2024 meeting

Newly diagnosed? Here are five things to do or know right now.

1. See a movement disorders specialist (Albany Med has a handful of them)

If you haven’t done so already, it’s important to see a movement disorders specialist, especially if you have nagging symptoms that remain untreated despite your current therapies.

2. Exercise

Exercise is an important part of healthy living for everyone. For people with Parkinson’s disease  exercise is more than healthy — it is a vital component to maintaining balance, mobility and activities of daily living. Exercise and physical activity can improve many PD symptoms and has been shown to delay the disease progression. These benefits are supported by research.

Find local, PD specific, exercise classes here:

https://www.cdparkinsons.org/exercise

3.  PD does not affect everyone the same way. The rate of progression and the particular symptoms differ among individuals.

4. Get the Davis Phinney Foundation “Every Victory Counts” book.

https://davisphinneyfoundation.org/every-victory-counts-manual/#evcorder

5. PD is a slowly progressive disease.
If you see health problems developing and changing quickly, see a doctor.

=========

Lifetime Achievement - Paul Tonko video 4 mins

https://youtu.be/duu_SduWjXk

Jill's slides

P4P Enrollment form

https://www.cdparkinsons.org/_files/ugd/304770_bea35098f411428c8cd4f43be733a7dc.pdf

NMW Enrollment form

https://www.cdparkinsons.org/_files/ugd/304770_c3e4521b0f3f4a41ad8a910309877f1e.pdf

John O'Leary website 

https://johnolearyinspires.com/

John's message to our group

https://youtu.be/UhgC0JZ6GgM?si=GrWj1t2hAY7U3viC

PRESENTER: John O'Leary - Once expected to die, John now teaches others how to live. Decades after the fire that almost took his life away, John now holds one of the greatest gifts of all: perspective. As an accomplished speaker, author and podcaster, John shares his perspective to awaken you to your life’s potential and energize you to live more thoughtfully, more boldly and more inspired.. John has pre-recorded a presentation for us. This meeting will be an opportunity for those in person and those online to discuss and respond to John's presentation in small groups.

TOPIC: In March 2016,  John O'Leary  published his first book, On Fire: The 7 Choices to Ignite a Radically Inspired Life, which became an instant #1 national bestseller. His second book, In Awe: Rediscover Your Childlike Wonder to Unleash Inspiration, Meaning and Joy, was also an instant #1 national bestseller when published in May 2020. His story has recently been turned into a full-length feature film scheduled for theatrical release in Fall 2024. Read more about John https://johnolearyinspires.com/

WHERE:  Glen Eddy senior residence,

1 Glen Eddy Drive, Niskayuna NY 12309

Directions 

Use main entrance. Park in upper lot along the stone wall. Meeting room is on second floor. Elevator and stairs are off the lobby to the left.

This meeting will be a hybrid meeting.

You are encouraged to attend in-person at Glen Eddy.

OR Attend by Zoom.

TO ATTEND BY ZOOM MEETING: [link removed]

Meeting: Thursday, February 8, 2024 -  7:00 - 8:30 p.m.

PRESENTER: Sarah Cohen, PT, DPT, Administrator, Center for Parkinson's Disease, Stony Brook Southampton Hospital

TOPIC: Falls Prevention and Parkinson's: What can you do to Stay Steady

People  living with Parkinson's disease are twice as likely as healthy older  adults to fall and demonstrate a nine-fold increase in recurrent falls.  Yet, falls are often preventable. Join us for this discussion on the why  we should care about falls, what are  the PD-specific falls risk factors, and most importantly, what you can  do to decrease your fall risk and stay steady!

WHERE:  Glen Eddy senior residence, 

1 Glen Eddy Drive, Niskayuna NY 12309

Directions 

Use main entrance. Park in upper lot along the stone wall. Meeting room is on second floor. Elevator and stairs are off the lobby to the left.

This meeting will be a hybrid meeting.

You are encouraged to attend in-person at Glen Eddy.

OR Attend by Zoom.

Meeting

SUBJ:  Dr. Kevin Mansfield, new neurosurgeon at Albany Medical Center, on deep brain stimulation for Parkinson’s treatment

(Regular monthly meeting of Capital District Parkinson’s Support Group)

WHEN:  Thursday, January 11, 2024, 7:00 - 8:30 p.m.

WHERE:  Glen Eddy senior residence, 1 Glen Eddy Drive, Niskayuna NY 12309

Kevin Mansfield, M.D. joined the Department of Neurosurgery at Albany Med in 2023. As a fellowship-trained functional neurosurgeon, Dr. Mansfield specializes in the surgical treatment of chronic conditions that affect a person’s functions and abilities, such as movement disorders. Dr. Mansfield will discuss deep brain stimulation (DBS), which involves placement of electrical devices that can directly change brain activity in a controlled manner. Questions and answers will be encouraged, and refreshments will be served.

Dr. Mansfield will be joined by Thomas Robb of Boston Scientific Corp., a leading DBS technology manufacturer.

Directions to Glen Eddy, 1 Glen Eddy Drive, Niskayuna:

Use main entrance. Park in upper lot along the stone wall. Meeting room is on second floor. Elevator and stairs are off the lobby to the left.

This meeting will be a hybrid meeting.

You are encouraged to attend in-person at Glen Eddy.

OR Attend by Zoom.

TO ATTEND BY ZOOM MEETING:

2023 Holiday Party Saturday, Dec. 2nd

at the Glen Eddy Senior Living Center

starting at noon and going through 3:00

Respond by Tuesday, November 21.

We have given the food order to the chef.

Registration is closed. 

What: Capital District Parkinson’s Support Group

When: Thursday, November 9, 2023 - 7:00 p.m.

Where: 

 (** NEW MEETING PLACE *** ) (Directions)

Glen Eddy Senior Living

1 Glen Eddy Drive, Niskayuna, NY 12309 

(Use main entrance. Park in upper lot along the stone wall. Meeting room is on second floor. Elevator and stairs are off the lobby to the left.)

Speaker: Dr. Eric Molho, Director of Albany Medical Center’s Movement Disorder Center

Program: What’s current, what’s hot in Parkinson’s research, treatment, technology, etc. Question-and-answer format. Light refreshments served

This meeting will be a hybrid meeting.

You are encouraged to attend in-person at Glen Eddy 

OR Attend by Zoom.

TO ATTEND BY ZOOM MEETING

Social Security and Medicare 101:

• What is Social Security and who can participate?

• What are my Medicare options?

• How do Social Security and Medicare work together?

• What do Medicare Parts A – D cover?

• What should I consider in my decision about collecting Social Security early?

These questions, and more, will be covered in this presentation. Bring your questions with you!

Presented by:

• Patricia Stanley, Senior Analyst Community relation specialist with Atena 

• Sonde Wechgelaer, Licensed Sales Agent with OB 1 Insurance  agency.

Patricia is a lifelong resident of the greater Capital  Region.  She has  been in the Medicare Sales field for the last 15 years  with her most recent past position as a Health Care Advocate working in  all 3 major medical facilities in the Capital  Region.

Sonde is a lifelong resident of the greater Saratoga Springs region, where she raised her family.  She has been a  practicing RN for the last 25 years with an addition of Insurance Sales  for the past 5 years.

Here's the PDF of Medicare Booklet from the Social Secuirty Admnistration which was the basis of the slides presented. 

Presented by Rosemary (Rose) Gallagher, PT, DPT, PhD
Associate Professor and Admissions Coordinator

Parkinson's Foundation Physical Therapy Faculty Scholar

New York Institute of Technology
Program in Physical Therapy

Rose has a passion for helping people with PD get out into  the wilderness. Whether you have done door activities in the past and have given them up, or you have found a way to stay connected with the wilderness, or you want to learn about the benifits of outdoor activities and how you can get started, this meeting is for you. 

This meeting will be a hybrid meeting.

You can Attend in-person at Albany Med OR Attend by Zoom.

Not sure which you will do? Register for both to keep your options open.

NOTE: change of presenters. The presentation on Deep Brain Stimulation will be January 11, 2024

TO ATTEND IN-PERSO/N AT ALBANY MED

Location: Huyck Auditorium at Albany Medical Center. (Directions)

• Register for in-person attendance (We  will give this list of attendees to the AMC Security Desk, which will speed up your entry.)

TO ATTEND BY ZOOM MEETING

Register to attend online

When: Sunday, August 27, noon to 3

Where: The Crossings Park, South Pavilion,

580 Albany Shaker Rd., Colonie, NY.

Our support group will provide assorted sandwiches, seltzer and water.

Please use the link below to sign up and to let us know what food you will bring.

We also need helpers - please sign up below if you can take on a task.

RSVP by August 21st. If you can't commit by the 21st, you are welcome to register later.

Directions:
Enter the park from Albany Shaker Rd. Follow the park road to it's end.

Tell us how many will attend

Sign up for the potluck

Presented by Kiera Druhan, MT-BC

Neurologic Music Therapist

MEDRhythms, Inc.

Neurologic Music Therapy (NMT)™ is the therapeutic application of music to cognitive, sensory, and motor dysfunctions due to neurologic disease of the human nervous system. NMT has developed standardized interventions and clinical techniques for the use of music to address non-musical goals such as mobility, speech, language, and areas of cognition. These techniques rely on the music perception and production for inducing neuroplastic changes in the brain. NMT has shown to be effective with a variety of populations including stroke, traumatic brain injury, Parkinson’s Disease, Multiple Sclerosis, and more.  This presentation will include a brief overview of the neuroscience of music as well as demonstrate several NMT treatment techniques and how you can incorporate them into everyday life.

This meeting will be a hybrid meeting.

You can

• Attend in-person at Albany Med OR

• Attend by Zoom.

Not sure which you will do? Register for both to keep your options open.

TO ATTEND IN-PERSON AT ALBANY MED

• Location: Huyck Auditorium at Albany Medical Center.

• Directions to Huyck Auditorium at AMC

Register for in-person attendance (We  will give this list of attendees to the AMC Security Desk, which will speed up your entry.)

TO ATTEND BY ZOOM MEETING

Register to attend online [link removed]

Handout shown at meeting ( one page PDF)

https://www.cdparkinsons.org/_files/ugd/304770_2a916eee509540bc991e815f6c878731.pdf

In their work, Nina and Liz cover all the aspects of downsizing, from emotional issues, to decluttering,  to the specifics of the real estate process. 

This meeting will be a hybrid meeting.

You can

• Attend in-person at Albany Med OR

• Attend by Zoom.

Not sure which you will do? Register for both to keep your options open.

TO ATTEND IN-PERSON AT ALBANY MED

• Location: Huyck Auditorium at Albany Medical Center.

• Directions to Huyck Auditorium at AMC

Register for in-person attendance (We  will give this list of attendees to the AMC Security Desk, which will speed up your entry.)

TO ATTEND BY ZOOM MEETING

Register to attend online [link disabled for past meeting] and recieve the Zoom meeting link

==========

Resources mentioned in the meeting that may be helpful:

Transitioning from Driver to Passenger

From https://www.thehartford.com/resources/mature-market-excellence/dementia-driving

The Hartford Center for Mature Market Excellence® partnered with the MIT AgeLab to conduct research to bring clarity to the very serious and emotional issue of dementia and driving and to help drivers and their families plan a successful transition from driver to passenger.

When it’s time for loved ones with dementia to stop driving and how to help them cope with driving cessation. download or order your free copy of At the Crossroads (Family Conversations about Alzheimer’s Disease, Dementia & Driving).

Worksheets Excerpted From At the Crossroads Guidebook

• Agreement With My Family Worksheet

• Conversation Planner Worksheet

• Driving Activities Worksheet

• Getting There Worksheet

• Not Going It Alone Worksheet

• Warning Signs Worksheet

Senior Transportation Options Directory provided by the Albany Guardian Society

https://albanyguardiansociety.org/

Transportation is a vital link for seniors to remain active and independent in their community. New in 2021, the “Transportation Options for Senior Adults in the Capital Region” directory provides the name, contact information, specific services provided, hours of service, accommodations, and fees for the senior transportation options in Albany, Rensselaer, Saratoga, and Schenectady counties.

https://albanyguardiansociety.org/

==========

The  ability to drive safely is important in order to remain independent and  connected in social activities.  This presentation will discuss how  Parkinson’s Disease can affect the  skills necessary to drive safely and how you can be proactive in  addressing driving concerns.  This presentation will provide information  on;

• Facts about aging and driving

• Parkinson’s disease and medications

• What is a driving evaluation

• Deciding when it is time to quit

• Driving alternatives

• New York State DMV re-examination Process

This meeting was a hybrid meeting.

You can

• Attend in-person at Albany Med OR

• Attend by Zoom.

Not sure which you will do? Register for both to keep your options open.

TO ATTEND IN-PERSON AT ALBANY MED

• Location: Huyck Auditorium at Albany Medical Center.

• Directions to Huyck Auditorium at AMC

Register for in-person attendance (We  will give this list of attendees to the AMC Security Desk, which will speed up your entry.)

TO ATTEND BY ZOOM MEETING

Use this link to register in advance for this meeting:

[deleted link]

After registering, you will receive a confirmation email containing information about joining the meeting.

Join Dr. Robert Cochrane for an hour of fun, engagement and cognitively  challenging imrprovisation and storytelling games. Robert’s  evidence-based program was developed through a series of clinical trials in his doctoral studies in the Interdisciplinary Health Sciences  department at the University of Nevada Las Vegas. Parrticipants report  increases in confidence, creativity and communication. We also laugh a  lot. People with Parkinson’s, Care partners, family members and medical / wellness providers are all invited to join in as Robert’s approach  works to bring the whole PD community together to help us all get what  we need.

See more about Yes and.... Exercise (YAX) here https://www.yesandexercise.org/

Consider making a donation to YAX  Pay it forward https://www.yesandexercise.org/basic-01 

Read more about Robert and his 

This meeting will be a hybrid meeting.

You can 

• Attend in-person at Albany Med OR

• Attend by Zoom.

Not sure which you will do? Register for both to keep your options open.

TO ATTEND IN-PERSON AT ALBANY MED

• Location: Huyck Auditorium at Albany Medical Center.

• Directions to Huyck Auditorium at AMC

Register for in-person attendance (We will give this list of attendees to the AMC Security Desk, which will speed up your entry.)

TO ATTEND BY ZOOM MEETING

Register to attend online and recieve the Zoom meeting link

Register to attend via Zoom 

Presented by Melonie Pratt and Renee Birnbaum, advisors from Choice Connections NY,  A Free Senior Housing Advisory Service 

Would  you like to understand Long Term Care?   This presentation will focus  on the different types of care available, associated costs and levels of  care. It will help  you understand senior housing care options, amenities, costs and levels  of care as well as home care options and costs. There will be a review  of funding options available to help pay for care that include VA  benefits, long term care (LTC) insurance and Medicaid.  You will also learn about other resources available in the community  that help supplement care; grants, day programs, and volunteer  organizations.

This meeting will be via Zoom only.  

 After registering, you will receive a confirmation email containing information about joining the meeting.

NOTE: ChoiceConnections does not charge the senior or their family a fee for their help, but if a senior moves to a community that a ChoiceConnections advisor recommends, then ChoiceConnections collects a one-time fee from that community. The fee is a percentage of the first month's rent. That fee does not affect the rent.

Meeting materials:

Choice Connections brochure

Long Term Care

VA disability compensation

+VA disability compensation (pay) offers a monthly tax-free payment to Veterans who got sick or injured while serving in the military and to Veterans whose service made an existing condition worse. You may qualify for VA disability benefits for physical conditions (like a chronic illness or injury) and mental health conditions (like PTSD) that developed before, during, or after service. Find out how to apply for and manage the Veterans disability benefits you've earned.

Get VA disability compensation (pay)

Manage your Veterans disability benefits

More information and resources

Other VA benefits and services

Get VA disability compensation (pay)
https://www.va.gov/disability/

How to Keep an Upbeat Attitude in a Challenging World

We  may not be able to control what happens to us, in us, and around us.  But we can control how we respond to the ups and downs of life, work,  and relationships. Unfortunately, 85% of the population are “reactors,”  who think “I can’t help the way I feel … or … That’s just the way things  are.” The truth is you can become one of the fortunate 15% of the  people who have learned to be an “actor” instead of reactor. In this  presentation, Dr. Alan Zimmerman will give us a series of simple but  effective techniques to build and maintain an effective, powerful,  positive attitude.  

This meeting was  offered by Zoom only. 

Get (13 page, 1008 KB PDF)  Presentation Materials 

This  presentation will provide an informational overview on LSVT BIG &  LSVT LOUD presented by physical therapists and a speech language  pathologist currently delivering this protocol to Parkinsons patients at  Samaritan Hospital - Albany Memorial Campus. We hope  you can join us to see how LSVT LOUD/BIG can benefit you!

• Mandy Dreisenstock, MSPT graduated from Russell Sage College/Sage Graduate School. Mandy has been a practicing physical therapist at Samaritan Hospital, The Albany Memorial Campus since 2005. She was certified as a Certified Fall Prevention Specialist in 2020 and as a LSVT BIG provider in 2021.

• Nikki Acierno, PT, DPT graduated from SUNY Geneseo with her B.A. and earned her DPT from University of Vermont. She has been a practicing physical therapist and LSVT BIG provider since 2021 at Samaritan Hospital, Albany Memorial Campus.

• Fatima Khan MA CCC-SLP graduated from SUNY New Paltz (B.A.) and SUNY Plattsburgh (M.A.). She has been a licensed speech language pathologist since 2020 and working at Samaritan Hospital, Albany Memorial Campus since 2021. She was certified as a LSVT LOUD provider and SPEAK OUT! Provider this year (2022).

Albany Memorial Hospital - Physical Rehabilitation Center

Outpatient Services

600 Northern Blvd, Albany, NY, 12202

(518) 471-3195

This meeting will be via Zoom only.  You must register in advance:

After registering, you will receive a confirmation email containing information about joining the meeting.

================================

Flyers about LSVT at 600 Northern Blvd, Albany, NY, 12202

LSVT BIG factsheet Flyer (PDF) 

LSVT LOUD factsheet Flyer (PDF)

LSVT For Life Flyer (PDF)

CDPSG Holiday Party 2022

Come join us for food, desserts, and beverages; games; music and singing; fun and camaraderie on Saturday, December 10th at noon 

at the Delmar Reformed Church 

386 Delaware Ave, Delmar, NY.

Cost is $20 per person.

As a precaution to keep our community safe, please take an

at-home COVID rapid test on the morning of the event.

RSVP form -> https://docs.google.com/forms/d/e/1FAIpQLScdHt8yKqftHzFWCckCStisFGUWydF3iKf0bgYAnwt6WtZhPg/viewform

Payment form -> https://www.cdparkinsons.org/donate

November 10, 2022 7PM

Topic: How to Outsmart Parkinson's Disease: Tips & Tricks

Rebecca Gilbert, MD, PhD is Vice President, Chief Scientific Office for the American Parkinson Disease Association

The American Parkinson Disease Association (APDA) is the largest grassroots network dedicated to fighting Parkinson’s disease (PD) and works tirelessly to help the approximately one million with PD in the United States live life to the fullest in the face of this chronic, neurological disorder.

=============

Slides from Dr. Gilbert (PDF)

=============

This meeting was a hybrid meeting.

You can

• Attend in-person at Albany Med OR

• Attend by Zoom

Speaker: Dr. Eric Molho. Director of the AMC Movement Disorder Center.  
Topic: Current PD Research.

This meeting will be a hybrid meeting. 

You can

• Attend in-person at Albany Med OR

•  Attend by Zoom.

Not sure which you will do? Register for both to keep your options open.

TO ATTEND IN-PERSON AT ALBANY MED

• Location: Huyck Auditorium at Albany Medical Center.

• Directions to Huyck Auditorium

• Register for in-person attendance (We will give this list of attendees to the AMC Security Desk, which will speed up your entry.)

TO ATTEND BY ZOOM MEETING

Register to attend online and recieve the Zoom meeting link

Speaker: Patty McGee, RN, MSN and Integrative Nutrition Health Coach
Topic: Self Care is the New Health Care.

Slides presented at the meeting

https://www.cdparkinsons.org/_files/ugd/304770_7977ff5d9b6846038b5ec68e62367d8f.pdf

This meeting will be a hybrid meeting. 

You can

• Attend in-person at Albany Med OR

•  Attend by Zoom.

Not sure which you will do? Register for both to keep your options open.

TO ATTEND IN-PERSON AT ALBANY MED

• Location: Huyck Auditorium at Albany Medical Center.

• Directions to Huyck Auditorium

Register for in-person attendance (We will give this list of attendees to the AMC Security Desk, which will speed up your entry.)

TO ATTEND BY ZOOM MEETING

Register to receive Zoom link

Come join us for an afternoon of good food, friendship, and fun. This is a highlight of the CDPSG community calendar!

When:  Sunday, Aug 21, Noon to about 3:00 

Where:  South Pavilion, “The Crossings” Park, Colonie

Who:  Everyone in the Capital District Parkinson’s Community – even (especially!) if this is your first event.

contact Leah Purcell at leahpurcell257@gmail.com or 518-487-1536

Our theme this year is “Something Old, Something New.” We cherish our traditions, and we also welcome new experiences, especially with the support or our community.

• What’s new at our picnic this year? Instead of a big cook out, we’re having sandwiches as part of potluck.

• What are some of our picnic traditions? Good food, activities, and fun. We always welcome folks who are new to our community to the picnic; kids and grand-kids are welcome too!

There are many ways for everyone to pitch in before and during the event. We can't do it without you! Please fill out the picnic RSVP form today. 

Or contact Leah Purcell at leahpurcell257@gmail.com or 518-487-1536. 

DIRECTIONS:  Enter “The Crossings Park of Colonie, 580 Albany Shaker Road, Colonie, NY 12211. Once you enter the park, follow the park road all the way to it’s end, about 6/10 ths of a mile to the pavilion there.

Thanks,

Your Annual Picnic 2022 Organizers

Ian Wing, Sharon Wing, William Tuthill, Nancy Eson, Jud Eson, Art Kilmer, Leah Purcell

Communicating with others can be tricky, even in the best of situations. And living with Parkinson’s or supporting someone living with PD can make communicating even more complex. We’ll get some practical tips and cultivate a greater understanding of what’s needed when communicating one-on-one. Presented by Ellen Rupert  with help from Leah Purcell - both are members of our CDPSG who led communication skills trainings as part of their professional work.

Find the handout here: https://6b5c317b-7039-42b7-970e-801d4bd877b0.filesusr.com/ugd/304770_f2a8b9b492144df0946de1ce1259d867.pdf

Our guest speaker will be Lynda Shrager,

Local author, occupational therapist, social worker and a Certified Aging in Place Specialist.

Her book, "Age in Place: Keep Mom and Dad Safe, Keep You Sane"

has been reviewed by the NY Times 

Book details here -->  https://www.goodreads.com/book/show/36205917-age-in-plac

======

Meeting handout - At Home for Life

Contact Lynda

Lynda Shrager, OTR, MSW, CAPS

email: lgshrager@aol.com   

cell:  (518)368-0322

check out my web site: http://otherwisehealthy.com

follow me on twitter: https://twitter.com/LyndaShrager

like my facebook page: https://facebook.com/theorganizedcaregiver

get tips on instagram: https://www.instagram.com/organizedcaregiver/

Our next meeting will be Thursday May 12, 2022 at 7:00 PM

Nancy Nealon from the Parkinson Foundation. Nancy is a licensed NYS social worker (LMSW). She has worked in the greater Rochester area for over 30 years with individuals living with chronic illness and disabilities, and with the Parkinson’s community specifically since 2015. Her mission is to bring education programs to the Parkinson’s community throughout New York and New Jersey.

Nancy will be walking us through the Parkinson Foundation’s on line PD Health@Home Events.

Below are the links to resources that Nancy Nealon from the Parkinson Foundation gave us at our May meeting. In case you missed it, Nancy walked us through the resources on the Parkinson Foundation website. We also had a lively discussion about the resources, including  the Aware in Care materials (see one of the  links below). Nancy was very gracious at our meeting and she's an enthusiastic and experienced supporter of people in the Parkinson's community. She is happy to answer questions from individuals via phone or email. 

Notes:
Parkinson's Foundation | Better Lives. Together.
Landing page/front page of website

Resources & Support | Parkinson's Foundation
Aware in Care kit will be found on this page

Parkinson's Foundation - YouTube
Direct link to the videos page on YouTube

Parkinson’s Foundation Online Courses | Parkinson's Foundation
The Care Partner’s Online resource/courses will be found here

PD Health @ Home | Parkinson's Foundation
This link will bring you to the landing page for Mindfulness Mondays, Wellness Wednesdays, Fitness Fridays

Nancy Nealon  nnealon@parkinson.org 585.743.4636

Thursday, April 14 at 7:00 PM EST

Topic: Nancy Hovey “Caring for the Caregiver” and

Mike Coyle - graduate student who is going to speak briefly about bridging the gap between the PD lab and people living with PD and their care partners.

Join us on ZOOM

Our Next Meeting will be Thursday, March 10 at 7:00 PM EST

Join us on ZOOM

Topic: Overview of the 6th edition of the "Every Victory Counts"® manual from the Davis Phinney Foundation presented by William Tuthill, president of our group, and Leah Purcell, VP.

First published in 2010, the Every Victory Counts® manual broke new ground as the only resource of its kind, devoted solely to the principle of proactive self-care and a holistic approach to managing Parkinson’s. Now in its sixth edition, the manual presents essential information about Parkinson’s plus dozens of topics that are frequently overlooked but critical to helping you live well. William and Leah will give an overview of the manual and highlight changes from previous editions. Then you'll have an opportunity to share your thoughts, if you like.

Thursday, February 10, 2022 at 7:00 PM EST

There WILL NOT be an in-person meeting in February 2022

Join our ZOOM session at 6:45 PM to chat before the official meeting start, if you would like.

Topic: "Sustaining Our Relationships - It's Not All About Valentines Day"

It's important to have relationships with those who support us as we travel our Parkinson's journeys - especially at this time of year and especially during a pandemic. It's certainly not all about making one day special or even just romantic relationships. There are many forms of sustaining relationships.

We'll start the meeting with some words of wisdom to consider. Then we'll break into small groups so participants can talk about ways they have endeavored to sustain caring relationships. None of us are experts, but simply coming together in this way can be of support.

Presented by William Tuthill, CDPSG president and Leah Purcell, VP.

Will be a ZOOM-only meeting
on Thursday, January 13, 2022 at 7:00 PM EST

There WILL NOT be an in-person meeting in January

Join our ZOOM session at 6:45 PM to chat before the official meeting start, if you would like.

Topic: financial planning

Speaker: Steven E Herweyer, Chartered Financial Consultant® Retirement Income Certified Professional® LPL Financial Planner

Long-term financial planning is important for everyone -- but it is essential if you are coping with the expense of a chronic illness, such as Parkinson's disease.

Contact info. for our speaker:

Steven E Herweyer

https://www.herweyerfinancial.com/

sherweyer@moneyfoundation.org

518-631-2569

Speaker bio

Steven Herweyer Bio

Born and raised in Central Virginia, Steven Herweyer has spent his life in service to others. A graduate of the Navy Nuclear Power Program, he spent 8 years and 8 months as a Nuclear Electronics Technician and submarine Reactor Operator onboard the USS Casimir Pulaski and USS Sturgeon. After serving in his country the U.S. Navy and 14 years of further experience as radiological control technician in the civilian nuclear industry, he entered the financial services industry in 2006 where he continues to serve his clients, assisting them to build and live better financial lives.

He combines the critical thinking learned from the Navy Nuclear Power Program with an ability to breakdown complex financial concepts into bite sized chunks that everyone can understand and put to practical use.

Steven is a Retirement Income Certified Professional® and Chartered Financial Consultant® as conferred by the American College. He helps clients develop financial plans to navigate their course towards their goals, whether they involve investments, financial planning, Medicare assistance, annuities or life insurance.

Steven also gives back to his community as a member of his local church and Rotary.

Securities offered through LPL Financial. Member FINRA/SIPC.

Capital District Parkinson's Support Group
Holiday Lunch
Saturday, December 11
12:00 – 3:00 PM
Delmar Reformed Church
386 Delaware Ave
Delmar, NY 12054
(Directions)

Let’s celebrate the end of 2021 together at a sit down lunch with a choice of three entrees.

Good music, games, prizes and the always popular Secret Santa gift exchange.

Cost is $20 per person.

We share our members’ COVID concerns and will be social distancing in a spacious venue.
We ask that guests wear masks when not eating.

RSVP no later than Friday December 3rd 
(Click if not attending, but  you would still like to PAY DUES or MAKE A DONATION)

Thursday, November 11, 7 PM
Speaker: We will not have a speaker in order to allow each of us to speak and listen to each other.

This will be a hybrid meeting. Attend in-person at Albany Med or attend by Zoom.

TO ATTEND IN-PERSON
Location: Huyck Auditorium at Albany Medical Center. Masks must be worn inside AMC.
Directions:

• Park at the Physician's Pavilion lot on the west side of the hospital.

• Enter the building at the revolving door entrance to the "A" building.

• Follow the main corridor about halfway and turn left at the ceiling sign pointing to the Huyck Auditorium.

• Albany Med building map

TO ATTEND BY ZOOM MEETING

After registering, you will receive a confirmation email containing information about joining the meeting.

Part I

For 15 minutes, you will be paired with another individual or couple. Zoomers will be put in a randomly assigned break-out room, two screens (2-4 people) per room.

Please use the time for each of you to share:

1. A brief description of your PD journey, and a bit about yourself.

2. One PD related issue you are struggling with right now,

3. One PD related issue you have dealt with successfully in the past.

PART II

For the next 15 minutes, repeat  new groupings, same questions as Part I.  Zoomers will be put in a different randomly assigned break-out room, two screens per room.

Common Parkinson’s Misconceptions

https://parkinsonfoundation.org/blog/common-parkinsons-misconceptions

Part III

Share with the whole group items that were helpful for you.

15 mins of feedback to the whole group.

===== Chat and notes from meeting

From  Leah and Kevin Purcell  to  Everyone:

I think we all know how attitude can affect symptoms. Alfred shared a breathing technique to help with restless leg in the night.

--- Jud --- I will try to follow up with Alfred to see how he does it.

From  Ian Wing  to  Everyone:

Thanks Leah  Many of us have restless legs so would be good to share

From  Ian Wing  to  Everyone:

Hope to see everyone at the holiday party - good food and lots of fun. The venue is large and so we will be able to socially distance as you prefer. Please RSVP as soon as possible so we can plan as accurately as possible

From Bill Wiles

ok, we'll check the website to see the rest of the 7 misconceptions. Thank you, Jud.

-- Jud -- We talked about 2 or three of these Common Parkinson’s Misconceptions

https://parkinsonfoundation.org/blog/common-parkinsons-misconceptions

From  Ben & Sharon Wiles  to  Everyone:

yes, we got the link to the community resources from you today in an email. It looks very comprehensive!

-- Jud --- This searchable listing put together by Alzheimer’s Association and AARP, will help you get easy access to resources, community programs and services.

Start your search here https://www.communityresourcefinder.org/

From  Ben & Sharon Wiles  to  Everyone:

I'm curious. How many people are live and in person tonight (not zooming)?

-- Jud --- 27 screenns (some with two peoplw watching) registered to attend by zoom. I think most actually attended, although some had technical difficulties.

I didn't actually count, but I am guessing aboout 25 in attendance at AMC

Thursday, October 14, 7 PM
Speaker: Dr. Eric Molho. Director of the AMC Movement Disorder Center.  
Topic: Current PD Research.

This meeting will be a hybrid meeting. Attend in-person at Albany Med or attend by Zoom.

TO ATTEND IN-PERSON MEETING
Location: Huyck Auditorium at Albany Medical Center
Directions:

• Park at the Physician's Pavilion lot on the west side of the hospital.

• Enter the building at the revolving door entrance to the "A" building.

• Follow the main corridor about halfway and turn left at the ceiling sign pointing to the Huyck Auditorium.

• Albany Med building map

TO ATTEND BY ZOOM MEETING
.....

Our next meeting will be
Thursday, September 9 at 7:00 PM
Topic: a presentation about Duopa, a PD treatment option.

Beverwyck is closed to outside visitors until further notice.  This will be a hybrid meeting. Attend in-person at Albany Med or attend by Zoom.

TO ATTEND IN-PERSON MEETING
Location: Huyck Auditorium at Albany Medical Center
Directions:
Park at the Physician's Pavillion lot on the west side of the hospital
Enter the building at the revolving door entrance to the "A" building.
Follow the main corridor about halfway and make a left turn at the hall leading to the Huyck Auditorium.
Albany Med building map

====

Notes

Is Duopa™ for Me? The Pros and Cons of the Duopa Pump

https://parkinsonsdisease.net/clinical/duopa-pump-carbidopa-levodopa-pros-cons

Davis Phinney - The benefits of duopa™ for people with Parkinson's

https://davisphinneyfoundation.org/the-benefits-of-duopa-for-people-with-parkinsons/

MJ Fox - Duopa

https://www.michaeljfox.org/news/duopa-levodopacarbidopa

Parkinson's Foundation - Duopa

https://www.parkinson.org/Understanding-Parkinsons/Treatment/Surgical-Treatment-Options/Duopa

APDA - The many formulations of Carbidopa/Levodopa

https://www.apdaparkinson.org/article/carbidopa-levodopa-formulations-and-parkinsons-disease/

Capital District Parkinson's Support Group

SUMMER PICNIC 

Saturday, August 21, 2021 at 12 PM

South Pavilion, “The Crossings” Park, Colonie

Come join us for an afternoon of good food, friendship and fun. It has been a long two years and we have a lot of catching up to do.

There is no charge and CDPSG will provide hamburgers, kosher hot dogs and vegetarian skewers. We will also provide soda and bottled water.

In 2019, members were generous and there was some food left over - please err on the side of lower amounts of food and keep track of your dish in order that you can take any leftovers home.

Volunteers

We will need 2 or 3 people to volunteer to cook and 3 or 4 others to assist with set up, take down and clean up.  Please let Ian Wing know if you are willing to assist. Email is above.

As in 2019 we are asking that each person/family unit/ group of friends bring appetizers, salads and desserts sufficient for your group and  1 or 2 others. These will be shared by all.  Please keep track of your dish so that you can take any left overs home.

If your last name begins with:

A - C    Please bring chips and dip

D - F     Please bring “non chip” appetizer e.g. veg tray, hummus

G - J     Please bring a starch salad - e.g. potato, pasta or rice

K - N     Please bring a green salad

O - R     Please bring coleslaw

S  - V     Please bring pie or cookies

W - Z     Please bring a dessert appropriate for a warm summers day e.g. fruit salad

We’re looking forward to a fun day.  

Directions:

Enter the park from the main entrance on Albany Shaker Road

(GPS 580 Albany Shaker Rd, Loudonville, NY 12211)

Follow the park road 6/10 mile to the end. 

You will see the pavilion from there.

Please use this form to confirm your attendance before August 16.

Topic - "Your Doctor and You"

Guided discussion about how to prepare and get the most out of a Dr visit.

and

Discussion about what you expect from support group meetings. What you like, what you don't like and what will keep you attending.

IN PERSON MEETING!!

Location: Huyck Auditorium at Albany Medical Center

Directions:

Park at the Physician's Pavillion lot on the west side of the hospital

Valet parking may be available

Enter the building at the revolving door entrance to the "A" building.

Follow the main corridor about half way and make a left turn at the hall leading to the Huyck Auditorium.

Albany Med building map

https://www.amc.edu/bacc/upload/Albany-Med-Main-Campus-Map.pdf

There's no science fiction here.

The fast-growing field of devices that change your nerve activity by sending electrical signals to a specific area in your body, according to the International Neuromodulation Society.

From neuromodulation comes a therapy called a deep brain stimulation (DBS). For people living with Parkinson's disease and essential tremor, deep brain stimulation can be a revelation as they manage complex medical conditions, transforming their lives for the better.

Join us  to learn more about DBS and how it's enhancing the lives of people with Parkinson's disease and essential tremor.

Thursday, May 13, 2021 7:00 p.m. Eastern Daylight Time

Stephanie Longston, Occupational Therapist, Certified Stroke Rehabilitation Specialist, LSVT BIG Certified

Albany Medical Center Outpatient Occupational Therapy

Please call (518) 262-9700 to make an appointment.

Hours are Monday - Thursday, 7 a.m. - 7 p.m.

                      Friday -  7 a.m. - 3:330 pm.

Albany Med’s Outpatient Occupational Therapy services are located at 99 Delaware Ave. Delmar NY, 12054.

Overview of the OT clinic and the functional living environment, including a kitchen and bath tub, equipped with adaptive equipment people can try out before deciding if they want to purchase for home. Stephanie will be able to give a virtual tour of the OT clinic, showcase the equipment, and take questions.

Stephany demonstrated many tools and products that can be used to enhance quality of live and independance.

Notes:

Q. is there a store or catalog that sells this?
A. Amazon or Bed Bath and Beyond or other stores

Q. Are OT sessions covered by insurance?
A. Yes. Same as PT. There may be a co-pay. You need a Dr. referral,

Q. Please explain a little more about the help for driving.
A. Albany Med has a complete driver evaluatuon program including a driving simulater.

Q do you go to a person's home to evaluate their situation and what may be needed, say in the kitchen or bedroom

A. No. We do outpatient here. If you are housebound there is in home OT available.

Q. thank you!

From  Stephanie Longston  - info about devices

https://handsteady.com/en-us/

https://essentialtremor.org/resource/assistive-devices/#1583851656463-338a3eab-8753

https://www.caregiverproducts.com/body-care-grooming-kit.html

https://steadiwear.com/blogs/essential-tremors-in-daily-life/parkinson-adaptive-equipment

Some people were talking about the art activities at

Paul Nigra Center for Creative Arts

2736 NY-30, Gloversville, NY 12078 | P: (518) 661-9932 | E: mayl@thearclexington.org

https://www.pncreativeartscenter.org/

Dr. Michele Dagostine, of the Hartford HealthCare Medical Group, Chase Family Movement Disorders Center, along with Adamas Pharmaceuticals Inc., maker of Gocovri (amantadine extended release capsules). On Feb. 1 the FDA approved Gocovri to also treat “off” episodes in patients taking Levodopa.

Program

Prescribing information

Dr. Sarah Cipperly, PT, DPT

website: https://www.choiceptny.com/

email: sarah@choiceptny.com

Having grown up in Troy, NY, Sarah has returned to the capital district after graduating with her Doctorate of Physical Therapy. Sarah attended Nazareth College in Rochester, NY, where she was the captain of both the women’s soccer and softball teams. Since graduating Sarah has become a Certified Clinician for the LSVT BIG Program, SFMA and a Certified Clinical Instructor.

Improv, or "the art of composing, uttering, executing, or arranging anything without previous preparation” (Dictionary.com)

Michael Burns - will teach us to laugh and show us a fun, low-pressure way to reduce your anxiety, build resilience, improve your connection with other people, and strengthen our ability to adapt to life on life’s terms.

Speaker: Fran Weiss - Dietition for Hannaford, Registered Dietitian,  Fran will speak about nutrition in general, but focusing on older people and Parkinson's diet needs.  Do you want to make healthy decisions about what you eat?  Did you know that what you can eat can help keep your immune system strong?  And also that nutrition can influence blood pressure management?  Join Fran Weiss, MS, RDN, CDN from Hannaford as she discusses the impact of good eating on overall health.

Frances Weiss  Frances.Weiss@hannaford.com

Let’s CELEBRATE the end of 2020 and look forward together to a happy and hopeful new year.

If you have never been to one of our meetings, this would be a good one to start with.

DRESS UP in your best holiday gear! PRIZES for the most festive!

FOOD - Make your favorite holiday appetizer or cookie and sit back with a celebratory cocktail or mocktail!

Ian and Sharon are sharing their snacks.

SHARE YOUR TALENTS – a story, your favorite holiday tradition, a song or a joke.

GAMES - William and Greg are organizing a fun game with great prizes.  Ian will test your trivia knowledge again.

PRIZES will be mailed to you after the party.

Please download the Game instructions

and the Trivia answer sheet

And we’ll hear from BRUCE Plotzky again.

So SAVE THE DATE and get ready for an evening of ZOOM fun together!

Make or share some Party recipes

Dr. Robert Fox has been in practice in the Capital Region Area since 1986. Dr. Fox has completed a residency in Rehabilitative Optometry and is a Fellow of the College of Optometrists in Vision Development (FCOVD). He is board certified in Vision Therapy and Vision Development. Dr. Fox is a charter member of the Neuro-Optometric Rehabiliation Association (NORA). 

=======================

PD and vision articles:

==========

Davis Phinney Foundation

https://davisphinneyfoundation.org/i-have-parkinsons-and-am-experiencing-x-who-should-i-see/

Your issues may be related to the aging of the eye, but there are several issues related to vision that are unique to people with Parkinson’s. So, if you go to your general ophthalmologist, but the problem isn’t solved with new (or first) lenses, ask for a referral to a neuro-ophthalmologist. Neuro-ophthalmologists are ophthalmologists or neurologists who have received specialized training so they can diagnose and treat vision issues that are the result of neurological diseases.

Vision issues a neuro-ophthalmologist can help you with:

Eye movement issues that impact reading, depth perception, ability to focus, etc.

Blinking abnormalities

Dry eyes

External eye disease

Color vision deficits

Visual disturbances

General eye diseases such as cataracts, glaucoma, macular degeneration

==========

APDA

https://www.apdaparkinson.org/what-is-parkinsons/symptoms/eye-vision-issues/

==========

Parkison.org

https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Vision-Changes

==========
MJ Fox - Webinar: “Vision Problems in Parkinson’s Disease” April 2019 

https://youtu.be/8rcZN6wVDJc

==========

MJH Life Sciences

https://www.mjhlifesciences.com/

Patients with Parkinson disease were found to be more likely to experience vision and eye issues, such as blurry vision, dry eyes, trouble with depth perception, and problems adjusting to rapid changes in light, compared with people without the disorder, according to study findings.

==========

National Center for Biotechnology Information

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6597980/

Visual disorders like double vision, dry eyes, and visual field deficits are common but frequently missed in Parkinson’s disease. Here, we aim to increase awareness for these visual disorders in Parkinson patients by discussing several common problems that can be easily diagnosed using comprehensive history taking and a basic neuro-ophthalmological examination. We offer practical guidance for the patient interview and physical exam that can facilitate a timelier recognition of visual disorders. Such recognition has immediate therapeutic relevance, because Parkinson patients are strongly dependent on an adequate vision, for example to optimally benefit from visual cueing strategies.

==========

World Parkinson’s Congress

https://www.worldpdcongress.org/home/2018/4/25/vision-disorders-in-parkinsons-disease-and-clinical-implications

Among the most common visual and ocular symptoms associated with PD are dry eye and ocular surface irritation, a problem that may be prevalent in as many as 60% of patients.1 This is thought to not only be related to poor production and abnormal composition of tears, but also due to decreased blink rate with resultant subnormal tear distribution.2 Parkinson’s patients have also been reported to have problems with eye movements, especially convergence insufficiency.

Speaker: Dr. Eric Molho 

Dr. Eric Molho is Director of one of the only comprehensive Movement Disorders and Parkinson’s Disease Centers in New York State. His practice is almost exclusively devoted to treating Parkinson’s disease, tremor, and dystonia, as well as other movement disorders. Dr. Molho has served as the principal investigator on numerous clinical trials for Parkinson’s disease, enabling him to offer the most advanced treatments and knowledge to his patients. 

Announcements and notes for meeting

Welcome

Welcome new members and visitors

Gratitude for our Doctors at the MD Center at AMCH and our PD community

Next meetings will be:

• https://www.cdparkinsons.org/next-meetings

Community

Last year 10 people from the Albany area PD community travelled to Tokyo to attend the 5th WPC.  We bonded, learned and saw the sights.

Save the date

Will you join us at the 6th World Parkinson Congress to be held in Barcelona, Spain from June 7– 10, 2022. More than 3,000 people from 60+ countries are expected to attend the WPC 2022. Delegates will be those who are dedicated to understanding, researching, treating, and curing Parkinson’s disease (PD), including those who are living with it.

Nancy Eson: We would like to gage interest in a  care partner support group. If you are interested in knowing more, joining or leading this type of group, contact us through the website https://www.cdparkinsons.org/

Dr. Molho will take questions through chat.  You will be muted to avoid distractions.

Dr. Molho has graciously agreed to be speaker at our October meeting for at least the last five years (I don’t have records before that) and has been an excellent source of PD education for us.

Dr. Molho is the director of the Parkinson's Disease and Movement Disorders Center and currently serves as a professor of neurology and the Riley Family Chair in Parkinson’s Disease.

Dr. Molho (thank you William for the fantastic notes)

William’s notes on the Capital District Parkinson’s Disease Support Group meeting, Thursday, October 9, 2020:

Turnout: At one point we were at 45 Zoom screens, representing  60-70 people. I don’t know where we’d put everyone in a face-to-face meeting ;-)

WPC 2022: Dr. Molho promoted the next World Parkinson’s Congress, to be held in Barcelona June 7-10, 2022.

COVID-19 and PD: Dr. Molho’s office gets updates 2X a week on NYS and local Coronavirus and Covid-19 numbers. The state continues to report low rates of infection and hospital admissions, but Eric reminded people to stay vigilant and not get lax on prevention and protection measures. Some parts of the state are reporting new spikes and clusters. People with PD are reported to be at higher risk, but that is likely more due to age and other risk factors than due to PD by itself. People must assess their own level of comfort with risk, and use common sense when determining how physically intimate to get with grandchildren and other loved ones.

COVID-19 and ongoing PD treatment at Albany Medical Center: Ninety percent of consultations are currently in-person at the Mov’t Disorders Center. Of course, that number could change if the pandemic environment changes in the Fall and Winter. All safety and prevention protocols are being strictly observed. Nursing homes and hospitals have normalized their visiting policies, a loosening from the lockdown of the early months of the pandemic starting in March 2020.

Effects of pandemic on ongoing PD research & clinical trials at AMC: The initial lockdown bogged down such projects, as suddenly extra precautions and risk reduction had to be rushed into place for everyone. Things have started up again, however. For comprehensive list of clinical trials, see website  https://clinicaltrials.gov/ referenced in the Chat below. Here is a summary of Dr. Molho’s discussion of the major studies going on at Albany Med:

— The KARMET Study (aka the "Poop Study") on constipation and PD, being conducted with the firm Enterin Inc., looking at early involvement of the enteric nervous system in PD. This is a novel therapy, involving a compound that interacts with alpha synuclein protein. For more information or if interested in participating, contact Dr. Molho’s office.

— Motor Fluctuations Study, looking at “On/Off” states and working on treatment to level out the fluctuations. Could involve a combination of long-acting Levodopa and short-acting Levodopa. This would be an improvement on the currently-prescribed drug Rytary. The monitoring of symptoms by participants in this study is demanding, Dr. Molho said.

— Trial of a completely new drug, Cerevel, specific to the D-1 receptors. This study is just getting off the ground

— Federally-funded study to develop automated way of looking at brain MRIs to try to more accurately distinguish PD from other neurodegenerative disorders like PSP and MSA.

— A Study to Evaluate the Efficacy of Prasinezumab (RO7046015/PRX002) in Participants With Early Parkinson's Disease (PASADENA)

https://clinicaltrials.gov/ct2/show/NCT03100149

**N.B.: You can get a sheet from the AMC Movement Disorders Center listing and describing all the clinical trials Albany Med is involved in for PD and other neurological disorders.**

Q&A with Dr. Molho: Exercise, exercise, exercise. “There is no proven way to slow the progression of PD other than exercise.” A mixture of aerobic and resistance training. Stationary bikes, yoga etc. etc. Importance of finding an exercise activity you enjoy — otherwise you won’t do it.

Stem cell treatments: Some exciting prospects but even more unknowns and unintended outcomes

Probiotics and probiotics for constipation: Can work for some people but not for others.

— 30 —

Annotated chat below:

18:56:55  From  Carissa O'Rourke : I am doing LSVT but will be going out on maternity leave next week. There is a physical therapist at Albany memorial doing it. her name is Janet and we’ve been working together

19:10:49  From  Manuel Cruz and Suzanne Roberson : Can Dr. Molho speak to the benefits of exercise?

19:11:12  From  Thomas Estep  to  Nancy and Jud(Privately) : My name is Thomas Estep, I am a representative with Amneal Pharmaceuticals in Albany.  I can have speakers present at other meetings. My email is Thomas.estep@amneal.com.  518-506-8930.

19:30:06  From  Kristi LaMonica : Are new clinical trials listed on the AMC movement disorders webpage?

19:34:46  From  Nancy and Jud : https://clinicaltrials.gov/

19:40:23  From  Nancy and Jud : https://www.nourianz.com/ ?

19:49:22  From  Steve & Tracy : what is the value of the https://www.apdaparkinson.org/article/what-is-a-datscan-and-should-i-get-one/

19:49:49  From  Steve & Tracy : what is the unified Parkinson rating scale? https://en.wikipedia.org/wiki/Unified_Parkinson%27s_disease_rating_scale

19:51:26  From  Kristi LaMonica : will AMC be part of the monoclonal studies? Also for the D1 drug, a patient can’t be on meds at all?

19:51:27  From  Steve & Tracy : what in the digestive tract causes the growth of alpha-sinucleans?

19:57:39  From  Bruce Plotsky : What are your thoughts on 'young plasma'? https://parkinsonsnewstoday.com/2020/07/22/young-plasma-infusions-safe-potentially-helpful-parkinsons-patients-phase-1-trial/

20:01:08  From  Steve & Tracy : if someone exercised 30 min/day before being diagnosed, should they increase the intensity and/or daily duration after diagnosis?

https://www.parkinson.org/Understanding-Parkinsons/Treatment/Exercise

https://davisphinneyfoundation.org/high-intensity-exercise-slows-parkinsons-progression/

20:03:33  From  JoAnne Stanoski : could you, please discuss stem cell, laser treatment & the use of oxygen ( hyperbaric ) treatment for park. thanks

20:07:16  From  JoAnne Stanoski : as an FYI for everyone, I did a probiotic regime a while ago & now have no problem/issues w/constipation.

20:09:21  From  Manuel Cruz and Suzanne Roberson : Any promise from fecal transplants?

20:13:14  From  JoAnne Stanoski : are there any new things  (treatments) going on in Europe that we don’t have here?

20:22:46  From  Victoria Plotsky : Thanks Dr Molho!! : )

20:23:02  From  Carissa O'Rourke : thank you! great information

20:23:40  From  Kristi LaMonica : Thank you!

Care Management: Strategies for Successful Aging

Hear how working with an Aging Life Care Professional (ALCP) can offer you optimal success in identifying and planning for the many potential challenges of aging. A care manager can help ensure the quality of life you choose to create and minimize the need to face crises unprepared.

Presenter: Tanya Zelman Schwartz, LCSW-R, C-ASWCM, Care Manage for All LLC.

Tanya Schwartz, LCSWR, C-ASWCM

Advanced Professional Member of ALCA

Care Manage for All, LLC.

518-512-9679

TanyaZelmanSchwartz@gmail.com

Speaker: Donna Stressel, OT, of Sunnyview Rehabilitation Hospital’s Driver Rehabilitation Program.

Multiple studies have shown that drivers over age 60 are generally some of the safest on the road. They are more likely to avoid unsafe behaviors such as speeding, driving under the influence of alcohol, talking on cell phones, and not wearing seat belts. That said, it is important for elderly drivers, and their loved ones, to make sure they are road-ready and driving as safely as possible. 

Sunnyview Rehabilitation Hospital’s Driver Rehabilitation Program offers a comprehensive array of services for elderly drivers, adolescents with learning needs, and the disabled, including clinical assessment, on-the-road evaluation, driver rehabilitation and consultation/education about adaptive driving services. For more information on the program or CarFit programs in the area, call 518-386-3601.

-----------

Resources

Parkinson.org

https://www.parkinson.org/Living-with-Parkinsons/Managing-Parkinsons/Activities-of-Daily-Living/Driving

Davis Phinney

https://www.davisphinneyfoundation.org/blog/how-long-can-i-keep-driving-if-i-have-parkinsons/

M.J. Fox

https://www.michaeljfox.org/news/ask-md-driving-and-parkinsons-disease

Summer Picnic – CANCELLED

The Town of Colonie has cancelled all pavillion reservations for the summer.

Martel Catalano - founder of  https://www.beyondmybattle.org 

BMB provides support services and educational resources to foster engaged coping methods such as introspection, communication, and self-care.  Martel will speak about the founding, philosophy and services provided by the organization.

How stress and anxiety are related to Parkinson’s and what you can do about it.

We will discuss these two short articles and we will share our own ideas about handling stress.

1. https://www.apdaparkinson.org/article/stress-anxiety-parkinsons-disease/

2. https://www.parkinson.org/pd-library/fact-sheets/Stress-Management-for-PD

Meeting notes:

Speaker: Ella DiPietro, owner of Saratoga CBD Co.

out of buisness?

ADPA Statement about medical marijuana CBD and PD

https://www.apdaparkinson.org/article/medical-marijuana-and-parkinsons-disease/

MJ FOX

https://www.michaeljfox.org/news/ask-md-medical-marijuana-and-parkinsons-disease

Davis Phinney

https://www.davisphinneyfoundation.org/blog/new-research-medication-and-cbd-oil-in-parkinsons-with-dr-trevor-hawkins/

• Using CBD oil to treat symptoms of Parkinson’s is becoming more and more common; however, the lack of oversight and inconsistency from batch to batch are big problems

• There’s a trial going on at the University of Colorado right now for a CBD pill to treat Parkinson’s tremor

• The biggest hurdle for CBD studies is that there’s no monetary support – unlike the money that big pharma companies get

• If you want to experiment with CBD oil, make sure that you tell all of your providers about it because there can be serious drug interactions and be aware that each batch you get can be very different

NIH.GOV (National Institute of Health)

https://search.nih.gov/search?utf8=%E2%9C%93&affiliate=nih&query=cbd&commit=Search

FDA

https://www.fda.gov/consumers/consumer-updates/what-you-need-know-and-what-were-working-find-out-about-products-containing-cannabis-or-cannabis

medlineplus

https://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v%3Aproject=medlineplus&v%3Asources=medlineplus-bundle&query=cannabidiol+%28cbd%29

Project CBD (mentioned b Ella and links to her company)

https://www.projectcbd.org/guidance/get-started

"Project CBD was established in 2009 by journalists who had been covering the medical marijuana story—the science, the movement and the industry. "

ZOOM discussion: Creativity has been shown to be helpful for people with Parkinson’s.  Let’s share and learn about how our creative pursuits impact us.

We recommend, but don’t require, reading the articles linked below.

• Psychology Today - PD drugs and creativity

• ADPA - Art therapy and PD

After registering, you will receive a confirmation email containing information about joining the meeting.

ZOOM meeting. Speaker: Lynda Shrager - Author, occupational therapist, social worker and a Certified Aging in Place Specialist – Topic: Simple modifications that can help seniors make their homes safer and easier to navigate etc.. You must register to attend this meeting. Join our mailing list for meeting invitations.

Find her book here - https://www.goodreads.com/book/show/36205917-age-in-place

Location: from your smart phone, tablet, computer. or audio-only telephone dial-in. Bring your own refreshments.

The topics for discussion will be up to you. 

Do you know a person who will help make my home accessable?

Do you know a person who will help make a financial or estate plan?

Coping with social distancing? 

Access to medications, health care? 

Can someone offer to help me with ____? 

Can I offer to help someone else with ____? 

What to do while keeping social distance? 

Can you share a song, a joke, a poem, a story, a picture, a recipe, a meditation? 

We all gain by continuing social interaction, and we can still see and talk to each other by joining a scheduled internet video ZOOM meeting.

You must register to attend this meeting. Registration infirmation will be sent by email to addresses on our list.

April 16, 2020 7 PM- ZOOM meeting

Recognizing OFF Periods Dr. Durphy, INBRIJA

Mike Rosa, David Wagoner, Acorda

June 14, 2018 – meeting – Chrissy Stack – MedRhythms music therapy.

​Chrissy Stack, MS, MT-BC, NMT/F, CBIS

Neurologic Music Therapist Fellow

Business Development Manager

MedRhythms, Inc.

ACBIS Board of Governors

Mobile: (518)-573-1554

cstack@medrhythmstherapy.com

More 

https://www.cdparkinsons.org/events/June-14%2C-2018-%E2%80%93-meeting-%E2%80%93-Chrissy-Stack-%E2%80%93-MedRhythms-music-therapy.

April 13, 2017 Speaker – Lynda Shrager – safely access and navigate homes